FIPRA Special Advisor and Chair of Together4RD Steering Group, Life Sciences Consultant Specialising Rare Diseases,Trustee at My Name'5 Doddie Foundation, Chair ISPOR Rare Disease SIG, Adviser European Haemophilia Consortium ThinkTank, Rare Disease Expert

Sheela Upadhyaya is a consultant to the life sciences industry and in her career has played several roles in the rare disease space. She has been in healthcare  for over 25 years with the last 15 in the rare disease space having led the NICE Highly Specialised Technology program, responsible for running the program to evaluate medicines and technologies for rare and ultra-rare conditions for commissioning in the NHS along with being their Rare Disease and COVID 19 strategic adviser.

She now consults with the life sciences industry and is currently chair for Together for Rare Diseases, an initiative to support collaboration with European Reference Networks and Industry to improve the landscape for research in rare diseases.

Sheela has extensive experience in understanding the issues that face the healthcare ecosystem when trying to secure access for medicines for orphan and ultra-orphan conditions. These include developing innovative access arrangements in liaison with industry, clinicians, patients and the NHS.

Sheela has co-authored several papers that discuss HTA methods for assessing the value of orphan medicines and presented at many conference issue panels on the subject.

Sheela also provides advice to the European Haemophilia Consortium Think Tank, is Chair for the ISPOR Rare Disease special interest group and Trustee of the My Name’5 Doddie Foundation.

Sheela has a passion for partnership working and believes that collaboration across the sector is the key to delivering high quality outcomes for all.